just a quick one - does anyone else get so cold they could just cry? The only way to warm up appears to be heating on 20° (not sustainable financially) with dressing gown, thermals, hoodie, blanket or walking for 40mins in a padded coat hat, gloves neck buff etc. for context I used to be freezing permanently prior to graves so it was lovely to finally be warm assuming I’m back to the misery that was “normal” 😞 but it hurts and so tired … and no I’m not due for blood tests until mid February and no the doctors will not bring that forward under any circumstance. 🤷♀️
not really expecting a reply just having a grumble 😖
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I think T4 was about 16 and TSH doesn’t budge anyway and remained at 0.01 when tested on 02.01.24 - just watching the clock tick down before I can go to bed - it’s all wait for these days favourite time of the day.
I used to have a hot bath at least twice a day just to stop shaking with cold... I'm not familiar with carbimazole dosing, can you not just decrease it a little as you are obviously over medicated and it's making you hypo...
Edit... if fT4 is 16 with the 12-22 range you are definitely needing to lower your dose
I’m slightly confused about the analogy of the T4 at 16, I don’t think I could be more in the middle of the range if I had actual control over it 😂 GP insisted previously my T4 at 17 was still “way too high”, endo seemed to want me on a higher dose of Carbimazole with T4 at 16 (I refused due to side effects) and I’ve yet to meet a clinician that gives a rats a&& about how you actually feel they’re just interested in numbers … so I can’t really just alter my dose without knowing what my numbers are and not due for testing yet - well i can alter dose but when I did previously i skyrocketed 😂 I’m just grumbling really … I’ll be quiet and wait for what I can get away with as bedtime (15 minutes to go 🤞🏼)
You have hypo symptoms which tells us you are suppressing your levels too much... with fT4 at 16 that puts you at 40% when most of us need to be around 70-90% this is why you feel so cold you don't have enough circulating... what is your resting heart rate and BP?
Middle of range isn't what you are aiming for, you need to find where in the range suits you and 16 obviously doesn't 🤗
Dunno about BP haven’t checked it in ages but resting heart rate is anywhere between 65-75 but tbf that’s not changed much from its higher levels of about 80 … bedtime now as totally whacked …. Despite my one hour pm nap 😂
Yes. A hot bath gets me warmer when I most need it, or hot porridge. Then I get dressed to the nines. I've found the best hack for reducing heating bill is turning all radiators down on thermostatic valve to 1/2 way, then only have my most insulated room with radiator on and close the door. Put my thermostat in the warm room. Then I only have it on periodically like 2hr blocks. Then do exercises like stretches, 'plank' or pressups to warm up more before entering the rest of the house.
I've recently invested in more insulation of my walls. Not cheap. I think subconsciously I've craved a warmer house. My bills have halved from the radiaor trick above, but its annoying having just warm room. Since insulating all walls I notice a warmth in house v extension. I don't tense up with anticipation now when going into previously colder spaces.
how long have you been on the Anti Thyroid drug and do you have and willing share your original TSH, Free T3 - Free T4 readings and ranges and the results of the antibodies found positive and over range in your blood at diagnosis ?
You're allowed a moan or two :
When I used to get extremely cold I would be in a sleeping bag on the sofa with 2/3 heat packs on my lower back and my spine - as well of course of several layers + 2 pairs of socks -
If you can walk out out, even for a short period of time, despite the weather, it should be of an overall benefit to you.
Hang on in there - maybe take your temperature twice daily - am and pm - from now in until your appointment in February and present this temperature chart to the endo in ~
and talk of these symptoms and hopefully the endo will register and accept these low numbers when he decides your next AT dose.
Anti-Thyroid drug? too long in my opinion (July 2023 diagnosed June 2022 (severe GP negligence)) - never felt worse since taking it, but I made a promise to someone so for the immediate future I continue... I messed with my 10mg dose in Sept - Dec 23 and numbers went straight back up.
TSH has never budged since June 22 remains at 0.01
T4 June 22: 36 Oct 22: 32 Dec 22: 28 Feb 23: 41 Mar 23: 29 Aug 23: 17 Sept 23: 22 Nov 23: 34 Jan 24: 16
T3 Dec 22: 10 May 23: 13 Aug 23: 5 (I have to beg to get T3 tested and given up now)
Trabs Oct 22: 2.3 Mar 23: 3.58 (never been tested since and see above)
TPOs Oct 22: 13.5 Mar 23: 12 (never been tested since and see above)
Can you see any ranges within these results please - as your levels do not ' look that high ' and also for TRab - I think we usually see a cut off at around 1.80 but laboratories vary depending on machine and assays implemented.
Graves is an auto immune disease for which there is no cure and all the AT drug drug does is semi block your new daily thyroid hormone production while we wait for your immune system response to calm down -
with the 64 million $ question being - why and what caused your immune system to turn and start attacking your body - rather than defend it ?
Your Graves journey is unique to you as each patient has a different back history though stress and anxiety seem common triggers -
with puberty, child birth and menopause being times of heightened hormones :
The most recent research is suggesting the longer one stays on the AT drug the better the long term option for the patient -
rather than offering definitive treatment too soon -
though fully accept that for some patients if the AT drug isn't tolerated well and or the endo unable to find a dose of Carbimazole or Propylthiouracil ( PTU ) to ' allow the patient a life ' -
loosing one's thyroid - is the next alternative offered -
and believe a thyroidectomy is the cleanest and safest option - though - yes - it sounds alarming as no surgery is without risk and likely feels as though you're between a rock and a hard place.
Seeing as your TRab went higher when you first reduced the AT drug - was the treatment option of Block and Replace offered ?
This is when your AT drug is increased to fully block your thyroid production BUT a measured dose of T4 - Levothyroxine is prescribed so your T3 and T4 do not fall too far through the ranges causing the equally, and in some cases, more debilitating symptoms of hypothyroidism ?
thank you - I am in the UK and I am sorry but I don't have any lab ranges to hand.
I wasn't on AT until July 23 and Trab results were both prior to the administration of AT drug and the consultant isn't interested in re-testing it now.
I know a lot about the condition as I've done nothing but research it (my grandmother apparently had Graves but much much later in life) and honestly I know everyone on here is a MASSIVE fan of the Elaine Moore stuff but I haven't found anything on there particularly unique or useful.
I have not been offered nor likely be offered block and replace as I rarely hear from the consultant, he is the second one I've had and, due to consistent negligence in my healthcare I try to not have much to do with them if possible.
I'll just drag myself through to my next results - thanks for all the responses - I hope everyones story becomes a happy one
Ok - so that is interesting as you can see a genetic predisposition to this poorly understood and badly treated auto immune disease.
When metabolism is running too fast or too slow the body struggles to metabolise and absorb key nutrients from your food - no matter how well and clean you eat -
and if your ferritin, folate, B12 and vitamin D have nose dived which often happens non optimal core strength vitamins and minerals can unnecessarily compound your health issues further :
My consultant latched on to the Grandma thing - didn't seem interested in the years of trauma just prior to diagnosis of myself 🙄 anyway thats clinicians - they never listen.
Unfortunately the mental, emotional and psychological aspects of Graves Disease tend to get ignored -
since there is no cure nor quick fix -
it's inevitable that mainstream medical loose interest and just look at numbers and make us all mathematical equations as it's easier than talking and trying to understand some one's health issues.
I take a vit D tablet everyday - couldn't afford B12 as well it's one or the other I voted for D3 as I have PolyMorphic Light Eruption too so can't go in the sun ...
Well - if you could get the vitamins ad minerals run by your doctor you might qualify for a prescription or two on the NHS :
Are your eyes dry, sore, painful, light sensitive and or streaming with water - whatever you do please ensure all ointments and drops are Preservative Free even those prescribed by the NHS.
Just noticed as well I have a bit of a sore tongue - take that with a pinch of salt it's likely I guess I could have burnt it on dinner last night - but thought I'd add it in just in case :/
You are ill and your brain/ body is under extreme stress - and exhausted before you start your day :
A brisk walk twice a day for around 30 minutes - if you can manage it - will be more beneficial than this extreme of exercise which is not conducive at this juncture :
I beg to differ - if I hadn't let people traumatise me I wouldn't be in this mess - it is what it is and honestly I am not punishing myself I need to walk for mental health reasons - thank you though
Ahh, noon, I am so sorry for you reading your posts. Please, keep in mind, we don't 'let' people traumatise us, if our brains are traumatised at a very early age they wire differently and we are not skilled at avoiding people who are (re-)traumatising. Bessel van der Kolk and Gabor Mate would be very sympathetic. It is so sad that you are not being given good, kind care by the medics. Do you know about the 'squeaky wheel'? I think we have to keep in mind the 'squeaky wheel' and keep on and on, if necessary being irritating until the medics would rather take the trouble to organise the care we need. I know that's hard when you have not been brought up that way, but feel free to lean on and into us, we are all here because we have struggled, and we are happy to help you if we can.
Hey, I really sympathize with you, it's an awful feeling, one thing that's helped me is buying one of those oodie things, another possibility is that You're still burning through calories like crazy, I found this to be the case with my graves, although I was intolerant to heat, I was also freezing. Consuming too few calories may cause a person's core body temperature to drop, which can create a constant feeling of being cold. In a 2011 study, researchers found that people who consumed a restricted number of calories had a significantly lower core body temperature than those who consumed more calories? I'm curious if this might have any relevance here
I've moved my workstation closer to the radiator - I'm not burning anything at all - gaining weight everyday and exercising for 2.5hours everyday so it's not that, but I won't get into that now or the depression kicks in.
I'm so sorry you are plagued with this awful coldness - now and then I find it so painful that like others I have to have a long hot bath. Lots of good advice above, but my advice is Change Your Codename (or whatever they are called). You are extremely important and special, and you are loved!
An ankle-length sherpa hoodie has been a game-changer for me, this winter. I do wear several layers under it, and no longer bother to take it off to look "normal" when going out to wait for my shopping delivery. Previously, I relied on a "Space Robe", and now realise that was a help, but not enough. I experience temperature drops, even in mid-summer, and recover after a sleep of two to four hours under a sherpa blanket. When I've tried a 30-minute walk late at night, I find my temperature rebounds down to a lower level. I relented and lit my stove during the recent sub-zero snap, and the readings from my new clinical thermometer from Lidl are a bit disconcerting (rarely above 36°C, but my TSH is currently over-range), yet I'm more comfortable than before, and for less than the cost of two 25kg sacks of fuel, which would last me less than a week. Someone on the MSE forum has been doing similar for years, and points out the importance of insulation for the legs. A dehumidifier may need to be used, regularly.
Hi I had/have Graves Disease and was on Carbimazole and I began to feel so tired and I knew something wasn’t right - I went to drs and they did a full blood count and it turned out I had become allergic to carbimazole (apparently one in a million chance) and it was depleting my white blood cells so I had no immune system. They tried an alternative which did exactly the same and I ended up having an emergency thyroidectomy after having to take liquid iodine for a week to bring my thyroid levels down to an acceptable level. It might be worth asking for a full blood count.
thank you they did a full blood count in November 23 because of symptoms and all came back normal apart from thyroid - although just been looking at those and noticed this one Coded entry - Neutrophil count (42J..) 2.35 10^9/L [2.1 - 7.4] which is normal but bottom of range 🤷 - I mentioned above that my tongue felt sore and looking in the mirror it looks a little scalloped too - saying that I am a stressy person so likely just gritting and pushing ones tongue to me teeth 😂
It sounds like you went through a right ordeal I hope things improved after your surgery you poor thing - did you not get the usual rejection symptoms then? bruising bleeding flu like etc??
I don't think my body is rejecting it though I think it's going back to the misery of what was "normal" prior to diagnosis - I was always beyond cold, my lips would turn blue ... I remember an ex screaming at me in the middle of the night because he was shivering and realised it was my breath that was cold 😂
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40ng Carbimazole - hylerthyroid (Graves')
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Graves Carbimazole Done
